Learning acceptance: Meet @dbeshears1

Jul 18 9:00am | John, Volunteer Mentor | @johnbishop | Comments (28)

Member spotlight, meet @dbeshears1

JOHN: What brought you to Mayo Clinic Connect? 

@dbeshears1: I was struck suddenly by a disabling condition a few years ago. In my large network, I did not know of a single person with idiopathic peripheral neuropathy (PN). My local neurologist referred me to a couple of medical universities that I made long trips to visit. My doctors directed me to extensive and very helpful physical therapy, but they were unable to find a cause or cure, nor did they have  support groups or lists of resources to help guide me through this major lifetime event. I was left to simply check in with them every 6 months to see if anything changed. 

My life as I knew it was turned upside down. I had the financial setback of no longer being able to work and the physical setback of no longer being able to fully care for myself and to participate in the sports and activities that my husband and I were accustomed to doing together. I wanted my health restored and my life back. 

I felt alone in my search to understand PN and how to live well with it. After two years, a Google search on a particular symptom linked to a discussion on Mayo Clinic Connect. I signed up immediately and was just floored to learn that there were indeed many people like me struggling to learn about and live with this condition.

Physical therapy helped get me out of a wheelchair and to walk with the help of a cane. I’m thankful to be able to drive again. 

JOHN: What motivates you to take part in the community?

@dbeshears1: I was motivated and helped by people on Mayo Clinic Connect who have been dealing with PN for a long time and were willing to share their learnings from real experience. The volunteer mentors guided me to educational resources, research, and prior discussions on topics relevant to me. Members and mentors helped me realize that I needed to prioritize living with my PN as successfully as possible and try not to let negative emotions take away from the positive energy I needed to be able to do the activities I still can and like to do. Now that I’ve been dealing with PN for seven years, I like helping other people with the shortcuts shared with me that helped me get to this stage.

 JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@dbeshears1: Very few of us with idiopathic PN have identical symptoms or challenges.Members in the support group span a wide age range and have a variety of other preexisting conditions. I find I need to be open if I’m seeking to get specific help from people with similar issues. In return, members are very open because we all have the same end goal. 

JOHN: What support groups do you participate in?

@dbeshears1: I only participate in the Neuropathy support group because it’s the most unique thing in my life that I’m struggling with and impacted by every day. I don’t hesitate to browse through other discussions or support groups when something comes up that I’d like to learn more about.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@dbeshears1: I wouldn’t say it was a single moment, but there was a turning point where I realized a frequent presence in the neuropathy support group was helping guide me through my neuropathy journey. At times I was spinning my wheels and not forging ahead with more acceptance. I might never know the cause of my PN and there just isn’t a cure for me (yet). I needed to focus more on what I can control to make living with PN easier. 

Ed developed PN before me and was ahead of me in the acceptance process. But he seemed to know I had to exhaust myself and get some things out of my system in order to, as Ed would say, start focusing on what you CAN do. I give Ed much credit for helping me to stop feeling sorry for myself about what I can no longer do and to find new things that I can do with my current condition. I’ve learned to appreciate what others take for granted.

JOHN: What surprised you the most about Mayo Clinic Connect?

@dbeshears1: What surprised me the most about Mayo Clinic Connect was having to stumble onto the website myself. Over the course of seven years with PN, I have moved to three different states with three different medical networks that didn’t have their own support group offerings to help people like me with certain chronic illnesses. I’ve learned from many others on Connect that they stumbled upon Connect similarly. Connect has been a game changer for me in dealing with my illness. Without a doubt, it is Best in Class. I would love to see other medical organizations help their patients by recommending Mayo Clinic Connect if they don’t have a similar network of their own. I try not to look back, but after two years of wandering around lost, I am so grateful to Google for getting me here!

JOHN: What energizes you, or how do you find balance in your life?

@dbeshears1: My husband is my biggest source of energy. He is a little older and in great physical shape and it’s important for both of us to stay active within our abilities. A recent solution was to move to a 55+ active community. He can play pickleball, run, bike, and play with others who can continue a very active lifestyle with him. I have tone and balance classes. There are also pool exercises we do together. When I have to sit, which is most of the time, I read or cheer for him from the sidelines. He loves yard work and I can do housework. It seems balanced to us!

JOHN: Tell us about your favorite pastime or activity

@dbeshears1: We recently moved back to South Carolina and our backyard is a lake with trees. It seems like a bird sanctuary, mixed with the occasional alligator and loud cicadas. Every nice evening we spend sitting outside appreciating nature. We have always loved baseball and football and like traveling to see our favorite teams play. Our seats have to be carefully arranged, but we still go to several professional baseball games a year.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@dbeshears1: “Don’t judge a book by its cover.” I have learned that with PN, we often look normal. People can’t see our pain or understand our limitations. While I usually have a cane or walker with me, people’s handicaps or illnesses aren’t always that obvious. 

JOHN: What food can you simply not resist?

@dbeshears1: Anything shellfish. I grew up on Chesapeake Bay in Maryland so it’s in my blood. I don’t fry anything, it must be steamed, broiled, grilled, baked or sometimes raw. Crabs, clams, shrimp, oysters, scallops… and Old Bay seasoning. I often travel with my own Old Bay seasoning!

JOHN: What do you love about where you live or vacation?

@dbeshears1: I have always loved water, just looking at it or being on it. At home we have a backyard with a lake and wildlife, and a community pool we take frequent advantage of. Our vacations are almost always somewhere on the water with an ocean view and a pool since I can’t walk steadily on a beach. But we’re thankful we have relatives who live near mountains so we have an excuse to visit when the East Coast heat gets unbearable!

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@dbeshears1

I so enjoyed reading your Spotlight. While I don't wander into the Neuropathy discussions, I'm so glad to meet you here! No matter our diagnosis, we all seem to travel on the same path of learning about our health issues and then learning to accept that life will always be different.

I can see that you have made a difference in the lives of others on Connect. Thanks for being here.

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@dbeshears1

What a great write up! I love your positivity. You are able to convey the balance between acceptance and resilience beautifully.
Thank you for sharing your story.
Patty

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@dbeshears1
I like it - do what you can and accept the limitations that life has placed on you. I still struggle with accepting anything due to a crushing sense of independence. Still, to deny reality would be foolish. I can accept that I had a heart transplant, but I will never let the acceptance move to resignation. sounds like you are of the ilk.
Best always,
s!
Scott Jensen

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@annshrader

Thanks for sharing!
Hope you are well on your way to achieving your goals.
Finding a community to connect with is one of the most powerful ways to find answers and build a community of sharing and mutual support.
Best,
Ann Marie

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is there another medication besides levodopa carbidopa that I can take

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@anitaxblack339

is there another medication besides levodopa carbidopa that I can take

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Have you considered consulting with the pharmacist or the doctor managing your prescription?

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@scottij

@dbeshears1
I like it - do what you can and accept the limitations that life has placed on you. I still struggle with accepting anything due to a crushing sense of independence. Still, to deny reality would be foolish. I can accept that I had a heart transplant, but I will never let the acceptance move to resignation. sounds like you are of the ilk.
Best always,
s!
Scott Jensen

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I hope you have also come to the acceptance that you still have a lot to learn and do and enjoy!

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Your story is very enlightening. Thanks for sharing

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@annshrader

I hope you have also come to the acceptance that you still have a lot to learn and do and enjoy!

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@annshrader Thank you for your wisdom, some of us take a little longer sometimes but eventually we learn. For me it was a challenge “ letting go and letting God take His rightful place in my life “! Thank you for your consideration.

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